UC Sufferer, aged 26, in a bad situation - Advice and experiences needed, Please!

Hi There,

 

I am Matt, 26, from the UK, and I have UC.

 

To cut a long story as short as possible, I have pancolitos - moderate/severe since 2005. From 2005-2010, I had no real issue - the odd nasty flare controlled with asacol and predfoam.

 

In 2010 I flared, and was prescribed 40mg oral pred, and since this, I have been having a real bad time. Here goes:

 

1. Aug 2010, flare, (medications reduced by doctors to 4 asacol a day, as I WAS SO WELL and in remission for a long time, I weighed a healthy 75kg and am 6ft 11 - I felt great!). A flare came 6-8 weeks after the medication reduction, but could have been due to stress, as I had some issues/change of job at the time.

2. Recovered from flare, and was back on asacol and predfoam for some maintenance, until I flared in April 2011. A serious flare - with a CRP inflammation level of 66. I was prescribed 60mg of oral pred, and, once again, slowly recovered by July 2011.

3. In October 2011, on 3mg of steroid, and predfoam, I start to feel a little uncomfortable - but, weekely blood tests showed no inflammation. Azathioprine was suggested, but not followed up on

4. November 2012, I start to feel a little worse, and am scared to eat. I weigh 58kg, and am anxious, and depressed. I am informed my white cell count is rising on a weekly basis slowly creeping to 12.5. At the end of November I weak and I flare - I am hospitalized with IV steroid, which helped a little. Azathioprine is started, and I am discharged with a CRP of 21.

5. December 2011. 3 weeks later I am hospitalized - I caught the cold/flu, which apparently could of made things work. CRP is back up, and no time for azathioprine to kick in apparently. I was on IV steroid for 7 days, switch to oral pred, 40mg, with no improvement. The surgeon visited me on New Years Eve , and I came around to the idea of surgery. Then, remicade turns up - and turns my condition round in 48 hours. I went from eating a jacket potato for lunch and dinner, to bacon rolls and shortbread biscuits - because I felt good! I was discharged. At this point I was on 30mg pred, (aza was stopped - not sure why at the time), and 4g salafolk granules.

 

After this, the consultant and NHS saga seem to begin. The is some contradiction as to whether I should be pursuing azathioprine, or on remicade. I had 4 infusions of remicade, with the 'final' in May. All was going swell, down to 3mg pred, no real issues. However, my white cell count dropped to 3, ON THE DAY I was due a remicade (as you can tell, have not had much luck in that last year!) and my consultant told me to stop azathioprine. 10 days later...I start a mild flare.

 

So, the situation - with the flare being very mild, there is a huge debate as to whether I should start up on remicade again, or continue on azathioprine and adjust the dosage. I personally, went for the azathioprine option, and am currently on a pred dosage, and trying to reduce azathioprine, but, things ARE A MESS. My white cell count is all over the place, on a weekly basis - it spikes up high, then subsides for a bit, but it seems when I drop pred, it can spike a little, and I get some uneasy feels and return of symptoms. So, we balance it with azathioprine, and small prednisolone adjustments. I am currently on 75mg aza (as of yesterday) and 15mg pred, we have also switched my salfolk to colaside (basaldaside) An example of my white cell fluctuations is as follows: 15/8/12 - WBC 5.7, 23/8/12 - WBC 10.1.

 

Now, for my burning questions (Thanks for reading so far!) 

1. Could I have been suppressed and got a low white blood cell count from being on remicade, and azathioprine 100mg previously? Different doctors give different answers, and I do not want to go down a false path of never taking a big dosage of azathioprine again if the remicade has been affecting the white cell count when I was on this treatment?

2. If I continue to struggle coming off pred, I will be going for long term remicade. A serious worry on my mind is reactions. I read about these, and am scared of them - Imagine me returning to remicade now and reacting so I am unable to take the medicine? This would be devastating, made worse by the fact that I had the option to continue on it previously, but was switched to an azatioprine approach. I have heard stories of remiade working for some people for a long long time, others, for not so long. Either way, I have to try it.

3. Another burning question! If, it is azathioprine that affects my white cell count, could I switch to 6MP? I hear again, many mixed facts and opinions of if they have the same issue with cell count? Does anyone have any experience with this?

4. Finally, I am also allowed Humira. It was mentioned yesterday that this is better than remicade, as there is less chance of a reaction due to it being a human biologic, rather than remicade which is a 50% animal biologic. I am worried - fiddling with human and animal biologics? Surely this is dangerous. This is a new drug for UC, but I am told it is excellent. Does anyone have any experience?

 

Okay, I think thas it. I am so scared, cannot plan anything, and frightened of food, and moving forward - I am a bit of a mess. I just want a clear path and answer. If I need surgery, I need surgery, I cannot go any lower, I am a real mess, but, surgery would devastate me, as I have been told again and again to 'keep going, we will get there, and beat this' (tears in my eyes as I write that part!)

 

If you have read this, thank you so much. I know its long winded and perhaps a little boring to those who are well and living a good life, but any support or options, and advice would be so great - so I can relate to other peoples experience. You can also message me if you wish!

 

Thank all, and I hope you are all good.

Matt

 

Hey Matt, I'm sorry to hear of your past and current struggles. Have you thought about assisting the meds with supplements and diet modification? Most GI doctors don't usually promote dietary health, but there are a handful on the forums that find alternative treatments very helpful.

Can you please tell us exactly what your symptoms are now and what medications you are now taking? Also, how is your diet?

Hi Matt,

I am not sure how GIs proceed with UC treatment over there, but your GI seems to be treating your UC in a way that I am unaccustomed to in the US.

Speaking from my own experience (my GI was a professor at the medical school of the university I attend), GIs treat from both ends, meaning systemic oral meds + rectal meds. In terms of oral meds, the progression is ASAs (Asacol is one) then steroids (Prednisone) then immunosuppressants (Azathioprine, 6-MP) then biologics (Remicade, Humira) and surgery as a last resort (colectomy). In terms of rectal meds, they start with a small area of coverage (Canasa suppositories, prednisone foam) and move to a larger area of coverage (Rowasa or Salofalk enemas).

From the way you tell your story, it sounds like your GI was treating the initial stages of your disease too gingerly, flip flopping on meds before they had a chance to be effective. Usually when someone is put on high dose prednisone, Azathioprine or 6-MP is given simultaneously, so that when the pred is tapered off, the immunosuppressant is already in full effect. Aza and 6-MP are the same medication, it is just that the dosing is different. Additionally, once Azathioprine is started, the idea is that it becomes a "life" medication, meaning you would take your Asacol and Azathioprine daily for the rest of your life while tapering from prednisone and weaning off of Salofalk granules (but only after you have been healthy for a few months). If you were prednisone dependent (meaning you could not taper without symptom recurrence) and Aza was not working at all, then you would step up to biologics. According to my GI, he focuses on the liver numbers more than the WBC count. Your WBC can be too low for a little while and that is okay, but if the liver panels are indicating toxicity then it is the dosage needs to be adjusted ASAP.

Is there some sort of rationale for jumping around between meds so frequently? Once you get a GI, does NHS allow you to get second opinions or switch GIs?

I tried both VSL#3 and Colazal without luck during my last flare up. I did however get into remission with 6mp and a few other additions. I was on an antidepressant which I think helped to turn my thinking around and made my UC better. I am on such a low dose of 6mp, I am not sure if it's helping but my UC has been stable and I am thankful for that.

I agree about biologics being sort of a bandaid solution. Some people get MANY years out of them but most people get just a few years if they are lucky. You also seem to get one chance with them, if you use Remicade and stop it, you may not respond in the future. It's not true for everyone but it's definitely something to be concerned about.

As for the j-pouch, it's a great option but I think 4x a day is seem as the VERY low end of a great result. Most people go 6+x a day which they say is not at all like going before surgery, it's quick and easy as peeing. I personally don't desire to go that many times a day either. I feel like if I went on Remicade, I'd just be hoping for a new drug to be approved soon that is a better solution because Remicade looks like a short-term solution. Right now, coming down the pipeline are Cimzia, vedolizumab, there is another pill form by pfizer that is trying for approval but they all seem like more of the same to some extent.

I do agree with Shartz, it does seem like maybe you haven't given the treatments you've tried enough time. Have you tried any rectal medications besides predfoam? I've heard that's quite a low dose, not enough to help with proctitis...

I have been on all the drugs you have mentioned. Since we all respond differently to different drugs, my advice is to go with what works for you: if Remi worked well in the past, I would say give it another go. Concern about reactions is valid, but that same risk is there with any of these drugs; bottom line is you won't know until you try, and then either way you can cross it off your list.

Humira may have lower risk of a reaction, but in clinical studies it was only about 40% effective for UC. (Remi is right around 60%, and Aza aomewhere around 50%.)

The response on this forum is great. I really appreciate it.

@shartz - I am currently under NHS, and also a private consultant, who is the lead for NHS in my area. I decided to go to a private consultant due to the unstability as of recentley, and me not being able to left to await our NHS system (it can be slow sometimes!) but, also because I think I saw some potential errors in the system, in that when I was sick, and kept getting given huge courses of prednisolone...recovered (as best as possible), and was not offered aza or 6mp to the very last minute when I had been tapering for 5 months. By this time it was a bit late for aza or 6mp, and I was really scared, as I kind of knew there was more than a 50% chance I was going to get sick again, which definatley did not help. Following this was my first hospitalisation :(

@notsosicklygirl - Aza does seem to so something for me, but, I am scared I am one of the 'unlucky ones' due to my WBC issues. Before on 100mg with my remicade treatment I was seeing my WBC drop every two weeks, and I figured it was not so good when it kept dropping below 5. However, it was stopped at 3.2, and then a few weeks I flared - right around the time I was 'due' for a remicade, but my consultant put in 20mg pred, and started the aza back up, and things have settled quite well (which is where I am now). Aside from that, I have no issues with aza, side effects, or blood issues, just the WBC. My consultant does seem confident he can find me a dosage, but I am just so nervous, also because we took the decision to try aza so I could 'save' remicade for later in life if needs be. Now I am at a risk of it perhaps not working anymore (my last infusion was in April). I was thinking if I could get 3 years or so with aza and a good life, then maybe another 1-2 on remicade, this could be a good path, but, this may not go to plan I guess.

Last week, after dropping to 10mg of pred on my 50mg of aza, I noticed some garling in my top right area of the colon, and suspected something was wrong, and then, i had some more urgency and the frequency was slowly creeping up, it genuinely seemed like things where unsettled, and my bllod test showed my white cell count had gone up from 5.7 to nearly 10 within the space of one week, and the pred drop from 12mg to 10mg. Like you have said, my nerves where quite bad at this time, and I am real scared, but when I saw this result it made me a little worse I think. I do my best to stay strong and positive, but sometimes the pred can really mess with your mind. With this happening last week, my consultant upped my aza to 75mg, and pred to 15mg, and things seemed to have settled within 48 hours. Not good I know, as its more than likely the pred had this quick effect.

I guess my only hope is that remicade works if aza fails, and my options would be
1. Continue remicade, reduce steriod, and perhaps switch to 6mp when stable to see if this would suit me?
2. Remicade, and then switch to Humira (less reaction/rejection concept) as suggested by my consultant.

In the meantime, little things my consultant has suggested:
1. Switch to baldaside (colaside next week)
2. Perhaps introduce 'amitripyline' (10mg low dosage) to help my nerves and anxiety if this is aggravating my UC, and perhaps to help pred withdrawls, if I can ever get down! :)
3. Look at VSL3, or perhaps some aditonal diet modification?

I just want the chance to get a clear life path, or my life back on track for a while, as this whole ordeal has got my confused - it seems like my whole life has just halted, and I have lost a 'chunk' of time being in limbo, and have perhaps missed part of growing up/maturing, even though I am sure this ordeal has perhaps made me strong in some ways, and there is some positive expereince to be taken from this? (I cannot belive I am saying that!)

Thanks again
Matt

I would ask your consultant for rectal meds. They can really help with your urgency and mucous issues you are still dealing with.

Hi Matt,

With regard to your questions about VSL#3, it helps a lot. The big problem with it is that it is prohibitively expensive. According to the original study which established its effectiveness as a treatment for UC, IIRC participants were taking 8 sachets per day. I believe that would work out to $40US of probiotics per day. Most of us don't have that kind of money, so we have to take it in more limited (and less effective) quantities. I take two packets of VSL#3 per day and make yogurt using VSL#3 DS as a starter. While I am not even close to being in remission, I am not in the fetal position in bed or on the toilet all day, so even that small amount has made a big difference in my functioning. It is not miraculous, but it is very worthwhile.

From my lurking on these boards, it seems like loads of people have improved dramatically by using Colazal/Colazide (Balsalazide). For me it was totally ineffective. Everyone is different.

Amitripyline seems to be a tri-cyclic antidepressant. TCAs are the older generation meds to SSRIs (Selective Serotonin Reuptake Inhibitors). One of the problems with TCAs is that they interact with a lot of meds. SSRIs have fewer interactions. Additionally, SSRIs may be more effective in dealing with UC related depression because they focus on the neurotransmitter serotonin (of which there is a large amount in the intestinal tract). Essentially, SSRIs can treat your depression while constipating you simultaneously. TCAs don't exclusively focus on serotonin so they may not be as constipating. You should discuss with your doctor which class of anti-depressants may be right for your situation and why. I took Prozac (an SSRI) for a couple of years after my diagnosis and found that it was not as effective as going to a support group.

Many thanks again for your kind advice and replies.

My symptoms seemed to have settled a little once again, but I am aware that I should not trick myself into thinking this is due to my aza dosage being upped 5 days ago - this is more likely the increase of prednisolone to 10>15mg, hardly ideal.

I am going to continue with my blood tests and monitors my white cells on the aza, and will also try to reduce prednisolone once again, but if I see issues, and the aza gets my white cells again, I will be going for remicade, (in the hope I do not react) and may persure switching to 6mp. If we have bad failures there, I guess I need to try Humira. I am also switching to colazide this week, and stopping pentasa granules.

@ stereo, I am looking to purcahse some VSL shortly http://www.vsl3.co.uk/order_vsl3. I guess it cannot hurt to try? I will start on one per day to see how I do, and can always increase a to two satchets if they agree with me? On a side note, I also use 20+ UMF manuka honey - which is really nice, and a better source of sugar to processed sugar, its also meant to have a little benefit for UC and overall health?

@shartz. My GI mentioned a low dosage of 10mg, to 'calm my tummy nerves or spasm' and pehaps help a little with the pred reduction? I really do hate pred reductions - my nurse described it as going from confident and elite, to weak and scared, and then, you can get some aggravation of any UC if you become nervous, a viscious circle. It seems many people struggle to get off of high dosages of pred.

I will continue to try, with some light bike rides and exercise, and also some relation with baths and music - plus, trying to stay positive, but that seems hard right now. Since getting ill from this flare in 2010, i have isolated myself a little from my friends and activities, and when attempting to return to my friends/activities, it seems little has changed, and I have not really 'missed much' and there is little enthusiasm for doing things, and activitys - which can disshapoint me a little. I guess this is part of growing up, and this is just a very very bad phase for myself. Who knows if I will get by with medication, or the operation/surgery. I am having a calmer more clear day today, but, when I get a bad day, its horrible, I just hope all this will end one day, and I can have a shot at living life once again.

Thanks, and any more thoughts or advice would be appreciated!

Matt

Thank you very much all.

I am seeing my consultant again this afternoon, and will be mentioning VSL3. I may give one satchet a day a try to start me off, and see how I react. Will also be swicthing to colazise (balsadaside) in the next 48 hours, so, we shall see what occurs.

My main fear at the moment is I know I am on 15mg on pred, which cannot be long term - this will ned reducing, its a question of the aza can hold me, and my white blood cells can tolerate it. If not, I guess it may be a switch to 6mp, and back on remicade.

I will keep trying - but moods are up and down with the pred!

Matt

peach_hat said...
Many thanks again for your kind advice and replies.

@ stereo, I am looking to purcahse some VSL shortly http://www.vsl3.co.uk/order_vsl3. I guess it cannot hurt to try? I will start on one per day to see how I do, and can always increase a to two satchets if they agree with me? On a side note, I also use 20+ UMF manuka honey - which is really nice, and a better source of sugar to processed sugar, its also meant to have a little benefit for UC and overall health?

I will continue to try, with some light bike rides and exercise, and also some relation with baths and music - plus, trying to stay positive, but that seems hard right now. Since getting ill from this flare in 2010, i have isolated myself a little from my friends and activities, and when attempting to return to my friends/activities, it seems little has changed, and I have not really 'missed much' and there is little enthusiasm for doing things, and activitys - which can disshapoint me a little. I guess this is part of growing up, and this is just a very very bad phase for myself. Who knows if I will get by with medication, or the operation/surgery. I am having a calmer more clear day today, but, when I get a bad day, its horrible, I just hope all this will end one day, and I can have a shot at living life once again.

Thanks, and any more thoughts or advice would be appreciated!

Matt

The VSL should not hurt one bit! You can start with one and work your way up to 8 capsules a day (if you can afford it --i cant lol). I've never heard of the honey, but it sounds good!

Whatever you do, keep your spirits up, this condition isn't something you have to accept or fully understand, because it is foreign but with a little fight, you can make things work in your situation! I have found success, and others, with adjusting diet. Getting rid of gluten, or grains and refined sugars in general really eases symptoms.

L-Glutamine powder is a great supplement, Omega 3 fish oil, and I use this great this great anti inflammatory called InflaGuard which has 750mg of Turmeric & Boswellia and 200mg of Devils Claw per serving. I cant remember if you mentioned you were supplementing with any of these.

Let us know how things are going! Best of luck

Hi, Matt. I might be beating a dead horse when I say once again, there are two types of VSL#3, capsules and packets. The capsules are an OTC (Over the Counter) product and I don't know of any insurance plan that will pay for an OTC. The packets are prescription only, at least that is what my pharmacy and insurance plan tell me. To have them prescribed, ask for VSL# DS packets. I know our health should be more important than wealth. However, if you have no wealth, choices for self-pay treatments is limited. Sort of a Catch 22. If you are a researcher on the web, I encourage you to look up Benebiotics and compare.

I am sorry prednisone has the effect on you that it has on many people. I fortunately do not have mood swings, nervousness, or trouble sleeping. Although the site says arthritis, it has great taper info. Scroll down until you come to
Dr. Zashin's Tapering Schedule To Reduce Prednisone Withdrawal
on the following web site.
http://arthritis.about.com/od/prednisone/f/withdrawaltaper.htm

The best of all to you.